Primary Immune Tribune
February 2016
IDF Presents: PI Voices
New Young Adult Webinar Series

The new IDF Young Adult Webinar Series was developed specifically for young adults to meet the needs and interests of this group. Participants can ask questions and discuss concerns with a live panel who share similar experiences of living with primary immunodeficiency. Learn tips for tackling the unique issues faced by young adults with PI (ages 18-30), all while connecting with others in the community!


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IDF Retreats 2016 - Boston & Salt Lake City
Don’t Miss These Fantastic Weekends!!

IDF Retreats are weekend gatherings for everyone in the primary immunodeficiency (PI) community – patients, parents, siblings, partners or children. Discover the latest information and develop better approaches to living with PI – all while having a good time with a wonderful community!

Boston, MA
June 17-19, 2016
Boston Marriott Newton

Salt Lake City, UT
August 19-21, 2016
Sheraton Salt Lake City Hotel


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Register for IDF Walk for PI 2016
Make a Difference, Help Create Better Lives for Those with PI

You can make a difference in the lives of individuals and families living with primary immunodeficiency through IDF Walk for Primary Immunodeficiency 2016. Registration is officially open, so now is the time to rally your team, raise critical funds and show you care about those living with primary immunodeficiency.

In 2016, we will be in: AtlantaBostonCharlotteChicagoClevelandFort Lauderdale/HollywoodHoustonLos AngelesMinneapolisNew York CityPhiladelphia, and St. Louis.


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Track Your Health & Help Advance Research
New Video from IDF

Watch IDF’s newest video to learn how to track your health & help advance research with IDF ePHR and IDF PI CONNECT. Created for all individuals with primary immunodeficiency, IDF’s electronic personal health record and IDF’s patient-powered research network are making a difference in people’s lives.

Click here to watch the video, and sign up today at www.idfephr.org.



IDF Survey Data Featured at 2016 CIS Meeting
Your Participation Matters

Four scientific poster abstracts based on IDF surveys were accepted and will be presented at the 2016 Clinical Immunology Society (CIS) Meeting in April. This further solidifies the importance of your participation in IDF research surveys, as we are turning the answers you give us into actual medical literature that researchers can refer to.

The four poster abstracts that were accepted include:

  • Quality of Life (QoL) in Patients with Wiskott-Aldrich Syndrome
  • Diagnosis of CVID: Results from a Joint CIS & ESID Membership Survey
  • Management for CVID w/Lung Disease: Results from a Joint CIS & ESID Membership Survey
  • Patient Reported Outcomes in PI: PROMIS-29 QoL Survey Results Utilizing the IDF ePHR Platform

All the posters will be turned into manuscripts and submitted for publication in 2016.

In addition to these poster abstracts, most recently IDF leveraged IDF ePHR and PI CONNECT to receive responses to the PROMIS-29 Quality of Life Survey.

To learn more about how you can be a part of research through IDF ePHR and PI CONNECT, go to: www.primaryimmune.org/idf-ephr.



Did You Know?


IDF does not charge patients or healthcare professionals for the educational materials or local programming that it provides. This is possible because of the generosity of the donors and sponsors who make unrestricted gifts to IDF. Your gift will help IDF provide these services to the next person who needs it.

If IDF has helped you, please consider giving back. To make your gift, call 800-296-4433, or donate online at www.primaryimmune.org/give.



Since You Asked
Question & Answer

Q: Are infusion ports appropriate for delivering Ig for primary immunodeficiency?

Q: What suggestions do you have for those with PI that suffer from fatigue?

Click FULL STORY to see the answer to these questions.


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Primary Immune Tribune is sponsored by an educational grant from Grifols.


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